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Twitching, painful, weak arm - meltdown

PostPosted: December 29th, 2014, 4:42 pm
by Xina535
I've posted about new scary symptoms with my mouth and throat (seeing ears, throat, nose) doc. tomorrow. I haven't been so scared of symptoms since all of this started.

Now, to throw more on to my list, I have a hot spot, major twitchy left arm. It's feeling so weak and tired, I can't hold a small pot of water without it shaking and trembling.

Thing is, it's also painful, soooo painful! I can't even touch it, and it starts in my back up by my neck and goes down my entire arm, my shoulder and upper arm are most affected. Almost feels "hot" but not always.

I know pain points away from ALS, but I do know of cases where people felt pain initially and I can't get that out of my head!!!

By the way, I didn't do anything to my arm, but it feels like a truck ran over it. I tried all pain meds that I have, even an infrared heat lamp, nothing is helping.

I thought about how maybe this could be related to my recent lip herpe outbreak? I don't know what else to think! Does anyone know if you heard of pain being present early in ALS, how severe does it get? I keep telling myself "no pain in ALS" but I keep recalling a you tube video I saw a long time ago where the man said he had pain at first. I wish I didn't look all this stuff up before! I don't mean to scare anyone, but I am so confused about the pain in ALS early on, is it there or not!?

The twitching is the most and strongest I've had in one spot.

Twitching, weakness and this pain! All came about in just a couple of days. I wanted to go to my ortho doc. today, but he is closed until next week.

I am taking any advice, tips, any kind of comforting words, but please be gentle to my anxiety and panic. I honestly have never had this happen to me yet (this with my arm) and I am confused and terrified!

Re: Twitching, painful, weak arm - meltdown

PostPosted: December 29th, 2014, 5:52 pm
by misterjuanperalta
My advice is enjoy to the fullest today, each day.

Re: Twitching, painful, weak arm - meltdown

PostPosted: December 29th, 2014, 6:00 pm
by Xina535
Thank you, great advice, but right now I can't enjoy anything with these symptoms.

Re: Twitching, painful, weak arm - meltdown

PostPosted: December 29th, 2014, 6:13 pm
by misterjuanperalta
The question becomes, would you be able to if the worse case scenario (unlikely what you fear)? So, if you can enjoy more now, do so. Plus, it's important to not worry about what you can't control. I believe what you have is not what you fear.

Re: Twitching, painful, weak arm - meltdown

PostPosted: December 29th, 2014, 6:36 pm
by Xina535
Ive thought about how would I be able to deal if ... But it is pointless to ponder that because I won't know unless it happens.

My post is asking advice about my symptoms, if others know about pain or have input about the timespan, if they had similar, etc.

I honestly don't know how I have not had a heart attack yet!

Re: Twitching, painful, weak arm - meltdown

PostPosted: December 29th, 2014, 7:02 pm
by misterjuanperalta
I have sensory issues. I can't affirm if related to ***. Therefore, I attribute it to something else. Do the same.

Re: Twitching, painful, weak arm - meltdown

PostPosted: December 29th, 2014, 7:12 pm
by veryworried123
I see nothing concerning here

I know it's very hard but I strongly suggest you relax...whatever that means to you

Go out for a walk
Hang out with friends
Watch a movie
Take your mind of it for a while it's exhausting trust me I know

Re: Twitching, painful, weak arm - meltdown

PostPosted: December 30th, 2014, 6:08 am
by Xina535
I appreciate your time to read my posts and reply guys!

As far as concerning - do you mean not concerning in the ways of MND or not concerning at all? I've had friends and people on here message me telling me that sudden arm pain, twitching and esp weakness/clumsiness is not really to be ignored, and many of them want that I go to a neuro or doc asap, regardless of what it may be. Thing is, all of my doctors, ALL of them, are closed right now and re-open on Monday. Only option is to go to the ER, which I am avoiding because here in Germany, they will keep you for days at a time and over the holidays and weekends, they don't do any testing, everything is like a stand still, so those days are just wasted being in a hospital bed. I have to try hard to baby step to next week. If my orthopedic doc can give me a shot in my left neck/arm like he did with my left lower back/leg, and have it help like it helped my leg, I will be so happy! It doesn't help me much at all right now that my left leg issues are slowing returning...

I've chatted with Yuliasir, I need to find a way to deeply relax. I am worried about drinking since I am taking my anti anxiety meds again. I do have some sleeping pills left over, no muscle relaxers (hard to get in Germany), so maybe the pills can provide a decent enough sedative effect. I called my hypno therapist to see if he has time to see me, but he is also closed/on vacation.

I have plans to overnight for New Years, overnight guests on the Weekend for my birthday and more guests on Sunday....part of me wants to quit everything and go to the ER and part of me wants to try getting through the days, to live and try to enjoy life and take my mind off of things. I feel very lost.

Re: Twitching, painful, weak arm - meltdown

PostPosted: January 1st, 2015, 11:10 pm
by Xina535
Update here: the twitching is intense, my whole arm/neck/shoulder is going into....what seems like constant spasms. It spread to my chest and throat a bit. In the night I woke up gasping for air (woke up not breathing -scared me to death!) and soon after that, my forearm felt like it cramped. Not sure if it cramped, it just got stiff, it was not painful, but was a little tingly and by moving it around, it stopped. I didn't see anything contract.

Also, the pain goes into a burning pain sometimes. Arm is still heavy.

Re: Twitching, painful, weak arm - meltdown

PostPosted: January 6th, 2015, 5:10 am
by Xina535
I saw my orthopedic doctor today, because I can't get any sleep with this amount of non-stop twitching, and twinges of pain....and the worry, of course.

He did a neck x-ray, did not see anything too wrong, just that I have a bad posture of keeping my neck forward, a "blockage" and tense/tight muscles. He performed some chiropractic work and gave me a few lidocaine shots in my neck/back and said I SHOULD feel better by tonight or tomorrow. I really really hope so! If not, then my next stop is the neurologist.

Re: Twitching, painful, weak arm - meltdown

PostPosted: January 11th, 2015, 4:33 am
by Xina535
No real improvement here, guys.

I went to physiotherapy on my own (self -pay), twice now, and the therapist said he felt the left side of my neck were extremely tense, so bad that he could feel an edge to a muscle.

It hurt when he massaged and stretched me, and it hurts just normally without doing anything, intensity changes. There are these pains in my upper outer arm that come and go, where I can hardly touch it, feels like a big bruise is there but isn't.

So pain is like wishy washy, comes and goes. Twitching and weakness are constant, no real improvement. Constant twitching from my neck/shoulder down to my fingers. I can't sleep. Awake every hour from the twitching. THE REST of the body wide twitching is pretty much gone! Except, I do have twitching in my throat...very scared.

I don't know what to think about this, but before physiotherapy, I used the hand gripper squeeze tool to see how many reps I could do. In my right arm, 30+ easily without getting tired. In this left arm, only got to 20, with struggle. Now, I can do the 30 in my left arm OK. Is that any kind of indicator of strength improvement? Sometimes I think so, but sometimes I think maybe other muscles are activated to compensate?

(PS - before in the summer, I could do almost 40 reps before starting to feel tired in each arm. Also, I only try once a day right now, I am not constantly using these gripper things b/c I don't want to make anything worse).

Everywhere I look for pinched nerve, it says "pain, weakness and muscle spasms" - not twitching. I BELIEVE these are twitches in my arm, since they are like the body wide twitches I've had. The only slight difference is they seem more fine and "crawly", rather than abrupt and prominent in one spot. I do not believe these are muscle spasms.

I am going to continue physio....but I am on the fence on if I should go back to my orthopedic doc and get/demand a cortisone shot in my neck (or see what he says) or just go straight to the self-pay neuro and drop 300€ for his eval and opinion.

Any thoughts, share of experiences, tips are much appreciated!

Re: Twitching, painful, weak arm - meltdown

PostPosted: January 11th, 2015, 7:07 am
by misterjuanperalta
Concentrate your funds on neuro, since that's your main concern.

Re: Twitching, painful, weak arm - meltdown

PostPosted: January 19th, 2015, 6:39 am
by Xina535
Thanks! I made the appt for this Thurs....

My left arm is not better, despite physiotherapy. Anything I hold in my left hand shakes like crazy, and I need to support it with my right hand. Even not holding anything, just holding my hand in the air, very shaky. My left arm is in a constant state of a vibrating/buzzing/twitching/shakiness.

I do have lots of pain in the back of my neck, though. The physiotherapist believes I have a "facet joint" issue. When they press on a certain point, instant tears from pain and dizziness! Still figuring this out...